Gail Dons

Deborah is right, the Michael J Fox TrailFinders is a good place to look for clinical studies. Also, if you have any medical schools in your area, often on their website there will be a link to the various clinical trials they are running. You usually can search by disease or condition.
I am in Chicago, and both Northwestern and Shirley Ryan…[Read more]

Hi Mary Beth and Jorge!
The most invasive things I’ve actually done (so far) have been sigmoidoscopy and a spinal tap. That’s nothing compared to the courageous individuals with advanced PD who are testing cerebral dopamine neurotrophic factor, and allowing them to inject it into their brains! Yet if (the big IF) this is effective, it is a pos…[Read more]

About participating in clinical trials: We want those new and better treatments. We want something that is neuroprotective. But to get these things, they have to be tried out on people – real people with Parkinson’s. If we don’t, who will? I have participated in quite a few trials – as many as I find for which I qualify. Not for the money, but…[Read more]

The spearmint gum helps me, too. So does a strong cinnamon gum.

Joel, Jean’s article gave some good links to follow for information on photomodulation with NIr. And those have further links to track down. . Here see several to get you started:

Red and near infrared light treatment, helmet based
h…[Read more]

<p style=”text-align: right;”>You’re absolutely right, Jean. Because Parkinson’s is such an individualized disease, there certainly is no harm in trying new things that are inexpensive and have a low possibility for side effects.   However, I want to encourage people to carefully evaluate the type of information they are being given before jump…[Read more]

I followed most of the links y’all gave, as well as the links to other publications that were supplied in some of the articles. I did not see any significant scientific study supporting either light or sound as an agent for neuroprotection (the Holy Grail).There was that article which described a project that people intended to do, and the small s…[Read more]

They have a lot of bugs to work out o this before/if it is ready for use by the general population. One of the problems is that the transplanted cell get Parkinsons, too!
A really great read for up-to-date issues is the journal Movement Dsorders (you may have seen it on your doctor’s shelf – it is one of the biggies) You don’t need an account – j…[Read more]

Hi Ronald!
Jean is right that Sinemet does not stop disease progression. So far, nothing (except maybe exercise) does that. So glad your mom has progressed slowly! Last year, I began having dystonia-like neck contractions that woke me up at 0530 almost every day. My MDS started me on a bedtime dose of Sinemet CR, and it took care of the problem.…[Read more]

I sing in the church choir. During the 6+ years since my diagnosis, my voice has become lower – an alto for many years, I can now easily sing with the tenors – and sometimes even with the bass! The really cool thing is that now I even have a little vibrato! Singing is a good exercise for breathing and voice stamina – and gives one a constructive…[Read more]

Oh, and I forgot to say that we can laugh together over some of our crazy experiences. Also, Parkinsons has its own “inside jokes”!

I joined the forum because I did not want to be alone. It is good to hear from PwPs everywhere: the variety of issues that plague us, the things that help us, and the things that make us feel better. We can encourage, inform, and commiserate. All over the world, we are in this together, and together we will be stronger, physically and mentally.

Oh good, Jo S! They tell me humor is good for both body and spirit! No pill can do that!

Don’t worry about the nuts, organic or otherwise – we already HAVE Parkinson’s! Our risk is 100%! Seriously, though, you have to take these small studies with a grain of salt. This was based on the recall of ~ 245 Greek Cypriots of how many servings of each food they eat a month. Right – have you taken one of those LONG diet surveys and tried to…[Read more]

I have had serious problems with insomnia, both fractured sleep and getting little sleep. I also have sleep apnea, and need to sleep with a full face style mask. My sleep doctor, bless him, let me have a sample of a new mask that had just come out, which reduced my awakenings somewhat, but the getting to sleep and staying asleep was still a big…[Read more]

I think Jean was stuttering…or do PwPs get email tremors, too.  😉

Hi Jean!

How do I write and edit a response, then cut and paste it into the forum without all of that gobbledygook gook? Or does our server have dyskinesia as well ? 😉

I have 5 adult children ( and 9.5 grandchildren!) and I wanted them to know and not be afraid to ask questions, each in their own way. We were going to be all together for several days Christmas, but I didn’t want a “big reveal” to be a primary focus, or to blunt our holiday fun. So, about 2 weeks before Christmas, I sent them all an email, part…[Read more]

If your back pain is from not rolling your shoulders back, then some of these posture devices might be a helpful reminder. However if , like many PwP, your back pain is from your upper abs getting tight/rigid and pulling you into a forward tilt, then these devices won’t help. I had a terrible time with axial instability, hunching over and trying u…[Read more]